1. < Chronic Pain

ACNES, Abdominal Cutaneous Nerve Entrapment Syndrome

Posted by leet3415 @leet3415, Mar 28, 2019

Hi. Quick back story. In Nov 2018 I had sharp pain in the top middle of my abdomen right below my sternum. Pain level 10 of 10. They thought it was my gallbladder, had it removed. Still had pain. multiple ER visits, hospitalized 2-3 times for a week each, 20 plus doctor appointments, over 100K spent in medical costs billed to my insurance.
As a last resort, went to Mayo and was diagnosed in under 30 minutes.

In January 2019 had my first trigger point injection, just had my 2nd injection March 2019. Still in a lot of pain. Taking gabapentin as well. **Has anyone else been diagnosed with this AND what are the symptoms & treatments you are receiving? Are you finding any relief?**

Interested in more discussions like this? Go to the Chronic Pain Support Group.

noaz | @noaz | Mar 20, 2023
In reply to @vlvhvlvh "Hi! I've had my right side done , T8-11 and am completely pain-free ! Dr Jafari..." + (show)
@vlvhvlvh

Hi! I've had my right side done ,
T8-11 and am completely pain-free ! Dr Jafari is going to do my left side on the 28th and then the Radio Frequency Abalation
will be next
Everything is done in steps bc it's not good for your liver to have too much steroids in your body
I don't know who your pain management doctor is bui all Dr Jafari's procedures are done at their Surgery Center.
I then will be scheduled for Radio-frequency Abalation.
I'm so excited about being pin free soon! It's been a long 4 years on suffering and .ot being able to enjoy life!
Thank you God!
I wish the very best on your journey! Where are you having your procedures done?
God Bless 🙌
Victoria

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What's Dr Jafari's first name? Where does he/she work?

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vlvhvlvh | @vlvhvlvh | Mar 20, 2023

Dr Amir Jafari works at the University of Florida Pain Management in Gainesville,.Florida

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1 reply
susanders | @susanders | Mar 21, 2023
In reply to @kdpetti "Hello Susan, No because Dr G is a surgeon and needs to know what nerve and..." + (show)
@kdpetti

Hello Susan,

No because Dr G is a surgeon and needs to know what nerve and where the issue is before being able to surgically repair. I believe I have an entrapped nerve what nerve is a matter of debate. I too have had nerve blocks with no relief. Lyrica has helped but I cannot sit or bend over. As I type this the pain is left side slightly lower than the belly button. I stumbled across the PUDENDAL nerve and this could be the culprit. I am coming off Lyrica to try Calmare Scrambler therapy, look it up. I will see a neurologist regarding the pudendal nerve. You can email me directly if you'd like, kdpettin@live.com or find me on Facebook and connect that way.

God bless you,

Kenji

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Thank you, @kdpetti. I hope you get the relief you need from the Calmare Scrambler therapy. It is interesting. I couldn't find any facility here that offers it, but I can search further or call the company's customer service.

I had internal and external pelvic floor physical therapy a long time ago for my pudendal nerve, and it helped some. Many practitioners have tried different therapies.

Susan

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1 reply
susanders | @susanders | Mar 21, 2023
In reply to @vlvhvlvh "Dr Amir Jafari works at the University of Florida Pain Management in Gainesville,.Florida" + (show)
@vlvhvlvh

Dr Amir Jafari works at the University of Florida Pain Management in Gainesville,.Florida

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Thank you, @vlvhvlvh. I will look him up.
Susan

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susanders | @susanders | Mar 21, 2023
In reply to @benacnes "Hello Susan, I'm glad to be able to help! I guess the only thing I could..." + (show)
@benacnes

Hello Susan,
I'm glad to be able to help! I guess the only thing I could add would be that I have some superficial numbness to the right of my belly button. Muscle function is normal. For me it was a miniscule price to pay to be ACNES pain free. Are you a long distance from Phoenix? Drm Gillespie and staff are very friendly and helpful. Once you have your initial appointment you won't be worried.

Ben

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Hello Ben,
Thank you for your reply. It really helps to talk with people who've had the procedure. Another question is have you noticed any difference in your bowel or bladder functions?

I am relieved to hear your muscle function is normal. I have an imaginary vision that severing the nerves will leave me with no leg function, unable to walk again. I used to walk and hike for exercise, and haven't been able to in years. I have lost some of my identity from ACNES, and my hope is to be able to 1) sleep on my left side, 2) go for a mile hike without suffering every night for weeks from the unbearable pain.

Lastly, I got up the courage to call Dr. Gillespie's office yesterday. I got the instructions to gather all my records and send them to him. He will review my file and then we can set up an appointment. He understands that I am a long distance away (in Kansas) and he can give me an initial evaluation by long distance.

Gratefully,
Susan

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1 reply
kdpetti | @kdpetti | Mar 21, 2023
In reply to @susanders "Thank you, @kdpetti. I hope you get the relief you need from the Calmare Scrambler therapy...." + (show)
@susanders

Thank you, @kdpetti. I hope you get the relief you need from the Calmare Scrambler therapy. It is interesting. I couldn't find any facility here that offers it, but I can search further or call the company's customer service.

I had internal and external pelvic floor physical therapy a long time ago for my pudendal nerve, and it helped some. Many practitioners have tried different therapies.

Susan

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Hi Susan,

So you are still suffering? There is a group of Dr's that do a pudendal nerve decompresion surgery. I'd be happy to pass along their information.

Kenji

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1 reply
susanders | @susanders | Mar 21, 2023
In reply to @kdpetti "Hi Susan, So you are still suffering? There is a group of Dr's that do a..." + (show)
@kdpetti

Hi Susan,

So you are still suffering? There is a group of Dr's that do a pudendal nerve decompresion surgery. I'd be happy to pass along their information.

Kenji

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Hi Kenji,

Thank you for offering the information. In my case, it's not the pudendal nerve.

Wishing you all the best of good health.

Susan

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kdpetti | @kdpetti | Mar 21, 2023

welp, there's the iliohypogastric, ilioinguinal and the pudendal nerves. Which are you suffering from? I'm unable to sit or bend over whatsoever!

God bless you!

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1 reply
benacnes | @benacnes | Mar 22, 2023
In reply to @susanders "Hello Ben, Thank you for your reply. It really helps to talk with people who've had..." + (show)
@susanders

Hello Ben,
Thank you for your reply. It really helps to talk with people who've had the procedure. Another question is have you noticed any difference in your bowel or bladder functions?

I am relieved to hear your muscle function is normal. I have an imaginary vision that severing the nerves will leave me with no leg function, unable to walk again. I used to walk and hike for exercise, and haven't been able to in years. I have lost some of my identity from ACNES, and my hope is to be able to 1) sleep on my left side, 2) go for a mile hike without suffering every night for weeks from the unbearable pain.

Lastly, I got up the courage to call Dr. Gillespie's office yesterday. I got the instructions to gather all my records and send them to him. He will review my file and then we can set up an appointment. He understands that I am a long distance away (in Kansas) and he can give me an initial evaluation by long distance.

Gratefully,
Susan

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I understand exactly what you're saying. I did not have a life for 3 years. I could not sleep on my side and sometimes the weight of the covers on my stomach would cause such excruciating pain. Was common to cry getting dressed the pain was so intense. I feel for you.

I had no issues whatsoever with bowel or bladder control or sensation. There was a small concern that a part of my abdominal muscle might not work but that wasn't the case. It will not effect the use of your leg.

I'm glad you got in touch with them. I flew down from Alberta, Canada and stayed at a hotel in Phoenex. There's one right by the hospital. They have a discount for patients of St. Joseph's. Totally worth the effort!

Ben

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2 replies
susanders | @susanders | Mar 22, 2023
In reply to @kdpetti "welp, there's the iliohypogastric, ilioinguinal and the pudendal nerves. Which are you suffering from? I'm unable..." + (show)
@kdpetti

welp, there's the iliohypogastric, ilioinguinal and the pudendal nerves. Which are you suffering from? I'm unable to sit or bend over whatsoever!

God bless you!

Jump to this post

hypogastric, inguinal

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